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Just wanted to post an update on Medicaid/Medicare's upcoming decision on whether to cover facial dermal fillers for hiv positive individuals...decision is to be made by March 23, 2010 Keep your fingers crossed that they will finally pay for lipo's effects on our faces.

here is the link to view the current tracking and estimated march 23rd decision.

If they do decide to pay for some type of cosmetic treatment for lipoatrophy at this point in time, it will be an exceptional occurrence.

Few, if any, private insurers will pay for any of these treatments and, in this climate of recession, adding this type of care would be significant for Medicare.

I rather think if Medicare approves it private insurers will follow suit, but I could be wrong. Honestly I don't know why it's such a huge deal, because from what I've read if approved you also have to jump a hurdle and provide proof that lipo has caused mental health issues, which means documentation (I assume) by a psychiatrist, which in turn would mean you'd have to have been going to one for some time.

When I met with my new doctor who will give me my Sculptra injections I actually brought this Medicare issue up with him as I knew it had been open for comments by Medicare twice now, and he wasn't even aware that it was this close to being approved.

Anyway, compared to other stuff this surely is just a drop in the bucket for Medicare. It's not like every HIV+ person has lipo issues, nor does it seem like it's as large an issue for people on new HIV meds and is (largely) confined to those of us on old treatment choices that we no longer even use, so in fact the pool for this procedure is rather limited IMO.

I rather think if Medicare approves it private insurers will follow suit, but I could be wrong. Honestly I don't know why it's such a huge deal, because from what I've read if approved you also have to jump a hurdle and provide proof that lipo has caused mental health issues, which means documentation (I assume) by a psychiatrist, which in turn would mean you'd have to have been going to one for some time.

When I met with my new doctor who will give me my Sculptra injections I actually brought this Medicare issue up with him as I knew it had been open for comments by Medicare twice now, and he wasn't even aware that it was this close to being approved.

Anyway, compared to other stuff this surely is just a drop in the bucket for Medicare. It's not like every HIV+ person has lipo issues, nor does it seem like it's as large an issue for people on new HIV meds and is (largely) confined to those of us on old treatment choices that we no longer even use, so in fact the pool for this procedure is rather limited IMO.

Good points. I agree, the pool of patients would be finite, especially since the new meds don't usually cause this issue.

Now, if they would only agree to remove my humpette and chipmunk cheeks, oh and the goiter neck of mine. I actually priced the neck for giggles - $1,500.

I am going with a friend to see a plastic surgeon at the end of the month.

I want to see what it would cost to remove the hump and neck. I can live with the rest, but its hard to find shirts to fit and I feel self conscious when I am swimming or such and am not wearing a shirt with a collar.

The collar seems to hide it.

I am not getting my hopes up though. If this guy wanted $1,500 just to do liposuction on a typical old neck to get rid of the turkey neck effect, I can just imagine what he would want to sock it to me for what I want.

Since the hump is often somewhat painful, and is causing problems with my sleep and sleeping position, maybe I could talk my insurance company into paying for it?

Of course, its not life threatening, so they will probably balk at it. But, I guess it never hurts to ask.

Marcia, do you have sleep apnea? I forget. Get your doctor to go the creative route and say it's complicating your apnea if you have apnea. If you don't have apnea, go get a sleep study done and maybe you have it! Seriously, there has to be a way for insurance to pay for it.

And on that note it's now been an entire month since my Sculptra consultation and I've yet to hear back from that doctor. Either he's a slacker or Sanofi-aventis U.S. LLC are slackers processing their patient assistance program. I guess I should give his office a call, but I think I'll give him another week.

And on that note it's now been an entire month since my Sculptra consultation and I've yet to hear back from that doctor. Either he's a slacker or Sanofi-aventis U.S. LLC are slackers processing their patient assistance program. I guess I should give his office a call, but I think I'll give him another week.

I'd be interested to hear how all of this plays out. I recall back in October 2008, I had to see the Dermatologist at the clinic I go to obtain primary care just to get a referral for a specialist to evaluate the grade of facial wasting and fill out the patient assistance forms for Sculptra so it could be shipped to her. I was told it would be a matter of weeks for her to receive the filler after the PAP got the forms.

Anyway, to make a long story short it was months later -- I think January 2009, I went to be evaluated and they claimed that the PAP forms were never filled out in October and they expected me to re-do them. I read them the riot act and made them look through my chart, where lo and behold, the forms were.

I was under the impression that they were going to send the form off and get the ball rolling. They gave me a copy of the forms and told me that I had to mail them myself to the Sculptra PAP. I followed the instructions and promptly mailed them the very next day.

I still haven't heard a thing from any of them - meaning the PAP, nor the Derm office after she called me to check and see if I had mailed the forms as instructed. It took everything within me not to light her into orbit when I last spoke to her back in 2009.

I just gave up, because when the time comes and I get over walking around with the heroin-chic look, I will put time and effort into trying to find someone who will actually do their job and file the fucking paperwork for the patient. I have never heard of such craziness, especially when the patient is not the one receiving the pharmaceutical materials --- meaning Sculptra doesn't send the filler directly to the patient; it is sent directly to the doctor's office [eye roll]

Or I'll just keep my fingers crossed and hope that the decision will be positive and I can use my little Medicare and Medicaid to get pumped up; that is if I don't go out on the hunt for black market silicone and a female impersonator to throw a pumping party

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

The decision was made today and medicare will cover the cost of the dermal filler injections for people hiv positive with depression caused by lipo. Not a perfect victory but at least a step in the right direction and maybe other insurance companies will follow through with even better coverage. Here is the link to read the final decision...god bless.

Burst thnx for posting the ref.. I printed it out and sent to my Plastic surgeon who has been supporting the Sculptra study... she has promised to look into what implementation process will be applied.. will there be a limit on the amount of "filler"? will there be a time period for " boosters"? will other "fillers " be added as they get approved by the FDA? will a preapproval be required before starting treatment?? cant say when or if she will get answers to all of these but they will certainly be discussion subjects... ..even the question of eligibility may be open to interpretation, will all Medicare eligible persons be allowed or just those over 65?? interesting to note that a provision was also included for the VA system.... which doesn't seem to have any "age" factor.. need to have someone check into that.. thanks again , very timely...

quote: Dermal injections for facial lipodystrophy syndrome (LDS) are only reasonable and necessary using dermal fillers approved by the Food and Drug Administration (FDA) for this purpose, and then only in HIV infected beneficiaries when facial LDS caused by antiretroviral HIV treatment is a significant contributor to their depression. All other indications are noncovered.

I've got my ass covered because I've seen a shrink specifically for lipo-related depression since late 2000.

"CMS disagrees that depression should not be a component of the clinical indications for coverage of dermal injections. We do not believe that the diagnosis of depression is overly restrictive as we recognize that depression varies greatly in terms of severity and type and may vary over time and the term depression as used in this policy encompasses these variations. In addition the policy is not requiring patients be treated separately for depression (e.g., seeing a psychiatrist or on an antidepressant medication) in order to have the diagnosis."

David I am still on the fence about this...I had my appointment with the Dr yesterday, in the decision package...there is the above quote..... we talked about that and she believes the medicare final processing guides will use that language as well. she has 40 patients ( all HIV+) in her study group including me. there are several hundred around the country... they have collected more than 4 yrs worth of detailed study data including the info about patient"depression" she says that will all be available to the Medicare committee for review in determining the frequency and amount of filler to be authorized. so far the annual filler "boost" for me has been 3 vials ( and that varies by original condition and foll0w up conditions)..I am on the fence because I am well aware of the "politics/funding" issues that will be raised. the 3 vials plus the Dr's fee can easily exceed $3000..... annually......initially I had more than a dozen vials over a period of months

as far as she knows there have been no "test" submittals claiming this procedure yet other than the original one that sparked the whole thing

I guess we will have to be patient and see what happens..... i hope yours goes well....

thanks pozniceguy for your update with the doc....i am going to try to find a doc that would be willing to see what we can figure out on this. with it being newly approved CMS will be working the kinks out and maybe soon we will get to have the treatments paid for.

My Dr ( Dr Bassichis, Dallas TX ) hasn't had the patient requirements to try this yet all of her potentially eligible people are enrolled in the study and will continue to get free treatment sponsored by the manufacturer for at least two more years...so there is some time to set the guides and the rules for authorizing this treatment..... she also felt that there may be a "pre- authorization" requirement as is true for other "restoration " work ...I hope whatever Dr is brave enough to start this will follow through the whole bureaucracy mine field..

1- Do patients have to remain depressed to get yearly touch ups ?2- Are Sculptra and Radiesse (the two FDA approved options) to be included in Medicare part D formularies?3- How much will doctors get paid for every session?4- Will there be a maximum number of sessions per year allowed?

Thank you

Nelson VergelFounderFacialWasting.org

******

This the reply from the JoAnna Baldwin from CMS. As you can tell, there is still a lot of work they need to do in establishing rates, etc. I will keep following up for updates.nelson

I hope to be able to help with some of your questions. Please see the below responses and please let me know if you have additional questions.

1- Do patients have to remain depressed to get yearly touch ups ?I do not know exactly how local Medicare contractors will implement the policy so there is always potential for variation in implementation when the national coverage policy is not explicit. I would venture to say that some documentation would continue to exist in the patientís medical record that depression is a continued concern and that these conversations be had between the patient and their treating physician. But again, the policy is not explicit in this regard.2- Are Sculptra and Radiesse (the two FDA approved options) to be included in Medicare part D formularies?I do not believe these products fall under Part D Medicare coverage. For example, if the injections are delivered in a physicianís office, then the physician would purchase the fillers and then bill Medicare for the fillers and for administering the injections. Part B co-pays and deductibles would apply to this service just as it would be applied to any other Medicare covered service.3- How much will doctors get paid for every session?The payment amounts are in the process of being established. Medicare participating providers would accept the payment amount as the full payment but again, co-pays for each office visit would still apply just as any other Medicare Part B service.4- Will there be a maximum number of sessions per year allowed?The national coverage policy does not limit the number of sessions per year.

Mine? Ugh, don't ask. After my initial consultation my doctor said it would probably take a month for my paperwork to be processed for the patient assistance program, and once the vials of Sculptra came in he'd call. After 2 months went by I'd still heard nothing so I finally called his office and evidently it's still not come in yet. I'm kind of wondering if Sculptra is quickly changing things on their end to prevent Medicare patients from being in their program, which would make sense, but I get the feeling my doctor doesn't know what's going on in this regard because it's all so new. In fact, when I went for my consultation I mentioned that Medicare was considering approving this (remember I went back the last week of February and at that point all I knew was that they were in the comment phase) and my doctor didn't even know that the process was that far along.

David I tried to follow up with my local congressmans office. they said If I could get them a case number ( someone who had submitted a claim) they could follow up and see where the process was standing,,, but I dont know anyone who has submitted or even tried to submit a case..... anyone out there?

As far as I know you have to have a form from the congresman or senator you talked or wrote to.

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1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like, two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea, Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. (2010 Now doing OK cd4=210 VL= < 75)I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects. I have the wasting syndrome, Fatigue . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

The congressmans assistant and I talked about the various ways to inquire about any issue. a general inquiry...IE "what is the policy for,........ in the HUD..( or any department) can just be a letter but to get specific in formation about how a case is handled you need to provide him with a "case # " he sent a form letter that can be filled in with the details..... but it does require that you have a case number that has been submitted as a claim..... I don't know of anyone who has done that nor did my ID DR or Plastic surgeon..... the original case that brought about the decision paper was essentially concluded by the release of that paper now someone has to actually try on the new "rules" with a claim... any volunteers???

I had my consult on April 28th. I was told that I was the first patient at UAB hospital in Birmingham to attempt to get Medicare to pay for this procedure. The doctor took those bad "before" pictures, and wrote a letter, and sent it all in....now I play the waiting game. I would assume they would go ahead and file it as a 'claim', because the consult visit had a charge of $75, which I did not pay.....

Will let you know what, if anything, is happening. Anyone else with any Medicare experiences with this?

Hugs,

Alan

UPDATE: the consult visit does appear on my Medicare online statement, at medicare.gov. It states that the charge was $124, medicare approved $61.12, paid $48.90, leaving me a balance of $12.22.Since they have paid for the consultation for the liopatrophy correction procedure, I am hopeful that the procedure itself will be approved with no problems!

« Last Edit: May 05, 2010, 11:41:56 AM by AlanBama »

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

well here's hoping this works out for both of you ..the Medicare issue in parallel with the patient assistance issue will be interesting to see.... Alan look for the "claim number" on the payment from... Medicare... that is the way to get info about status.....if they just paid that then closed the "case" another specific claim needs to be submitted or at least a request for preapproval for the filler needs to be done

Yes, I was told by the doctor's office yesterday that they don't have any way to submit photos/letters to Medicare IN ADVANCE of the procedure....and there doesn't seem to be a 'billing code' set up yet for the procedure....

So, they are telling me that I should sign a form stating that I will be the responsible payor if insurance does not pay, and then they expect Medicare to maybe DENY the claim? And will have to appeal it? It all sounds like a mess to me.....I wish I could speak to someone at Medicare and get some straight answers, but it is a waiting game with their phone system....

Not sure how to proceed at this point. Suggestions?

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Alan, I'm just going ahead with the Sculptra patient assistant program and I'll pay out of pocket for the (greatly discounted) doctor's fee for the injections, which is $50 a pop. When it comes time to replenish my face two years down the road I will assume that this Medicare route will be more formalized and I'll have stuff paid that way at that time.

Alan, use the Medicare general number, when all the BS listings stop press 0 or wait for someone to answer...then ask to be transferred to the Medicare Ombudsman office ( try to get the direct number if you can , they don't publish that #) but they will eventually transfer you to the Ombudsman office , probably get a recording but they do eventually call back

A lady from Medicare did return my call today! She stated that a release is going out tomorrow to providers to instruct them on how to code these procedures, so that they will be covered. I am relieved to know this, and my injections will be administered on June 9th.

hugs, Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

thanks AlanBama for the update...may i ask how you found a plastic surgeon that takes medicare I am having a problem finding any that do...anyone else know how to find plastic surgeons who do this procedure in Georgia and take medicare? any help is much appreciated. thanks ...keep on living!

I had my procedure done last Wednesday, and so far, I am very pleased with the results! There was more swelling and bruising than I anticipated....I still have two black eyes and the bruises on my cheeks have faded from dark purple to that mustard-greenish color...yuck. My doctor had anticipated using 4 to 6 syringes, but ended up using 8 (about $4,000 worth of Radiesse). I needed to come back to work today, ready or not....so I used my Dermablend cover stick as best I could, and with my glasses on, no one has paid me too much attention (a good thing!)

I had very minimal pain; the doctor injected 4 numbing shots into my gums, and applied some sort of numbing cream all over my face before starting....I felt very little, actually; a prick here and there. My instructions were to use ice packs (frozen english peas) 15 mins out of every hour throughout the first day (my procedure was at 10:30 am). In retrospect, I wish I had iced a little more, even throughout the night and possibly the next day as well, because I think it might had reduced my bruising some. I think for plastic surgery they tell folks 20 minutes on, 20 minutes off with the ice packs....that might have worked out better for me, who knows?

Will return in a month for follow-up, and touch-up, if necessary. My doctor was wonderful, and I am very happy with the work she has done.

Hugs, Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Alan thnx for the update, I am happy to hear the Dr had no restriction on how much was to be used... and did what she thought needed to be done..... sorry to hear about the bruising and black eyes..... i have had many procedures over the last few years, some with 8 or 9 vials and the worst case was some swelling for a few days.....but it all clears up in a few days...AND YOU WILL HAVE A NEW LOOK.....

Additionally, CMS has posted the instructions for Medicare providers regarding how to process claims for dermal injections for facial lipoatrophy. While these instructions do not consist of language that is generally helpful to PLWHIV, it is information that couldbe forwarded to a physician's office.

I'm wondering if anyone has a Dr. in New York that accepts Medicare for Sculptra injections. I seem to be having a major problem finding a plastic or derm who has agreed to accept the assignment. Any suggestions you have is appreciated

I had my second treatment yesterday; a little swollen and slightly bruised today, but nothing major; I am at work (with cover stick and foundation on) and I don't think anyone has noticed (at least , hasn't said anything).

My partner had his first injections done yesterday, and it moved us both to tears to see his face restored. His lipoatrophy in the cheeks was much more pronounced than my own; he was VERY sunken in, and the doctor injected a LOT of Radiesse into those depressions. He looks great now and after it all "settles down" it will be fabulous.

Hugs, Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

It is my understanding Medicare has approved facial fillers for HIV people with facial atrophy and are depressed implemented around July 6, 2010. My insurance company PPO has done a fantastic job researching this, and says they are up and running to accept the codes for medicare covered fillers in eligible patients. However it's not coming together at my derm's office with their billing department.

I'm now in this weird position where my derm is holding on two vials I got through Dermik Patient Assistance Program, but cannot administer until this medicare coding is in check with their billing department. Also, I cannot pay for the procedure now like I have before because it is now a Medicare covered treatment for eligible people like me, and it would be against the law for them to take my money and not bill Medicare first as i understand.

There does seem to be some problem with the billing; not sure if it is my doctor's office, or Medicare, or what...

I had my first procedure done June 9th, and NOTHING has shown up on MyMedicare.gov in my claims listing as of yesterday (Aug 31). I keep checking almost daily, and will let you all know if anything shows up.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Just saw this forum. I live in DC. I think it's a scandal that docs are either refusing to do Sculptra or Radiesse injections for Medicare and other insurance (I have high option federal government Blue Cross) or Medicare and Blue Cross are refusing to reimburse the docs adequately. It's not cosmetic, it's reconstructive. Like for breast reconstruction due to mastectomy. If Medicare and Blue Cross are not reimbursing the docs at a rate commensurate with what they're reimbursing for breast reconstructive procedures, it is DISCRIMINATORY. I managed to get some treatments paid for by Blue Cross, but it was a battle and the doc humiliated me for needing the insurance to cover it - it was a little traumatizing. I felt the treatments helped a lot, but I've switched to a different plastic surgeon. My previous doc was a BC preferred provider and supposed to accept what BC pays him. A non-preferred provider can bill me up front whatever he wants and then I file for BC to reimburse me at the rate they determine is appropriate. Friends who have Medicare have really gotten the runaround in DC. Is it the docs or is it the insurance companies? Something's f***ed up. I was amazed to see that the Medicare codes had been published - I found them on this site. The DC docs sure act like they've never seen them according to my friends on Medicare. People are embarassed to complain about this because it seems trivial compared to nto being able to afford or access good meds - but it is depressing and I think I can contribute more if I don't feel like I look like I'm dying.